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This story originally appeared on the In the Loop blog.
Haines and Colter Gauzens missed their dad. It had been more than two weeks since they'd last seen him — an eternity in kid years. "When's Dad coming home?" the 9-year-old twins kept asking their mother, Isis. "I'm not really sure," she'd tell them. "Dad is really, really sick."
Dad — Joe Gauzens — has Erdheim-Chester disease, a rare disorder that can cause a host of symptoms throughout the body. Joe's primary symptom is chronic, debilitating pain that keeps him at home most of the time. But he'd developed pneumonia, and was lying in the intensive care unit at Mayo Clinic's Arizona campus. Isis wasn't eager to take the couple's sons to the ICU, but as the days passed she decided it was time for a visit. "I would never have let the kids into the ICU, but Joe had been there so long," she says.
Before she took Haines and Colter to visit their father, Isis wanted to prepare them for what they'd see. To do that, she decided to speak to them in a language they'd understand: Legos.
Together, Isis and the boys built a replica of Joe's room in the ICU. There's a panel with buttons, representing his medications; a tower representing his monitor; and even a bed that tilts, just like the rotating bed that was used to help reposition Joe. The model also showcases the many, many staff involved in Joe's care. They're represented by Lego mini-figures inside Joe's room and standing watch, like tiny guardians, on top of the model's walls. At the center is Joe himself, outfitted in a dual-purpose cape. "The boys wanted their dad to be a superhero," Isis says. "It's also their interpretation of a hospital gown."
When Isis brought Haines and Colter to the ICU, the Lego model came with them. It was placed near a glass wall in Joe's room, along with a thank-you sign for the staff, including Ayan Sen, M.D., an intensivist, and nurse Natalie Marquez, who had done so much for Joe...
Read the rest of the story on In the Loop.
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